Adam McArthur’s Story

This is an especially sad story. His wife tells the story about the first days, waiting outside while Adam was in the operating room. The surgery was successful and the doctor suggested it was “possibly a mid-grade [glioma].” In three days, Adam had sprung back:That’s when we started researching like crazy. Regardless of what the result was, we were going to go alternative. Adam definitely did not want chemo or radiation, and the more research we did, the more comfortable we felt with that decision. If the tumor recurred, Adam’s prognosis was probably very bad. They made (generally healthy) lifestyle changes and stopped using cell phones, hoping to ward off a return of the cancer. They also got in contact with the Burzynski Clinic, who are completely incapable of making any promises. Apparently, by the end of January, they were planning to go to Houston.

Their first consultation with the Burzynski Clinic was on the 6th of February of 2012. The parents were not available and missed 2 of their children’s birthdays during that trip. They rented a Chevy HHR, left the kids with the grandparents, who were in from the UK, and drove down to the clinic. And then they were hit with the bad news, and an interesting look at what goes on inside the Burzynski Clinic (emphasis added):

Dr. Szymkowski met with us to discuss Adam’s medical history and confirm the details of his brain cancer. She also briefed us on the two possible approaches that Dr. Burzynski would take in Adam’s case. The first case scenario is his patented antineoplaston therapy. To qualify for that therapy, you have to apply to the FDA for special permission, and show that the cancer is “persistent” after using traditional therapy. Well, we assumed that this approach would not be appropriate, simply because the tumor has been removed and hasn’t had time to become what could be considered “persistent“. We then got to meet the man himself! The meeting lasted less than 10 minutes. He briefly explained that he would most likely be using a “gene targeted” approach to treat Adam’s cancer. […] One of the medications is sodium phenylbutyrate, which is one of Dr. Burzynkski’s signature medications. We were definitely excited about that one, because obviously we can only get that here. After being shuffled around a bit more, we were then sent to the financial coordinator. She showed us the fee chart that we had already received in our information packet. So, no surprises there. But… then she starts lis[t]ing the medications that Dr. Burzynski has prescribed for Adam, which are not included in the treatment costs. Sprycel… $8,314.80. Votrient… $3,098.40. (emphasis added)

Clearly these patients were being told that Burzynski would be treating these patients. Legally, this is very interesting since the entire premise of the TMB withdrawing their complaint against Burzynski in October was that Burzynski was not directing treatment.

Bullshit. And this is going on even as his lawyers are arguing in court that he is not responsible for the “decisions” that his doctors make, an excuse that actually persuaded a judge! I wish I were more familiar with the workings of law, as I suspect that such behavior is as ethical as perjury. The family then became aware of the serious side effects of these chemo cocktails that Burzynski was proposing, contrary to the hippy-dippy natural side-effectless hype that his supporters parrot:

At home we started talking. I did some online research into the drugs, and really didn’t like what I was reading. Side effects like “severe or like-threatening liver damage”, and “may cause you to develop a hole in the wall of your stomach or intestine”. My favorite one was, “may cause abnormal passage in the body”. Abnormal passage? So, not only would we have to spend $25,000 a month for the drugs, but Adam might develop a whole host of other problems as a result.

The family is about to back away from the therapy and, and only after that threat to Burzynski’s bottom line does the Clinic bother to inform them that there are more lesions in Adam’s brain:

Dr. Sano was very nice, and said she would certainly repect our wishes. However, since they found lesions in Adam’s brain this morning, it looks like the cancer may have returned and therefore the drugs would really be necessary. I nearly dropped the phone. Lesions? Already??!! It just wasn’t posssible. The doctor explained that due to the change in circumstance, she would need to meet with Dr. Burzynski and discuss what he wants to do next, and she asked us to go to the waiting room where she could talk to us face-to-face.

Boy, Texas Medical Board, it sure looks like he is directly managing patient care, doesn’t it? And that doctors working under him defer to his judgment instinctively, doesn’t it? I wonder whose signature is on those records? That would be very interesting to know.

And we were totally honest with [Dr. Sano]. We can’t afford the meds. We just can’t do it. She told us that it was now possible that Dr. Burzynski might want to put Adam in the clinical trial. Now he had a “persistant” tumor, and there was something measurable. If he was given permission by the FDA to receive the antineoplaston treatment, now there was material they could measure and watch it shrink. This is essential to be considered for the trial. […] (emmphasis added)

Dr. Burzynski is putting Adam forward for the trial. He is going to receive the antineoplaston therapy. The therapy we have read about from the beginning. The real reason we came here. She doesn’t know anything about the financials, which we’ll have to work out with the counselor tomorrow.

So, the Burzynski Clinic is doing a wallet biopsy, the only procedure that they are any good at. The McArthurs went ahead with ANP. They are desperately looking for supernatural signs that what they are doing is right, and they find them everywhere.

On the 15th of February, they received news that the FDA would abet another patient’s entry into a trial:Adam’s approved!!!!! Tomorrow morning Adam has an appointment at a Houston clinic to have his catheter fitted, then Friday he gets hooked up to the antineoplastons. […]Also, we’ve been told that Adam’s sodium intake has to be meticulously watched, and his fluid intake and excretion carefully monitored. I’ve been told, “If you can’t wake him up in the morning, get him straight to the hospital.” Fluid can accumulate in the body or brain and cause complications. (emphasis added)

As always, even the ANP can have dramatic and potentially lethal side effects, no matter what you hear.

And, WOW, when you look at the status of all those lesions that Burzynski’s group found on the MRI, it looks like their status/existence was not completely certain:We also had an appointment with the radiologist which was a bit depressing as well. We were misinformed before. The current tumor was NOT there immediately post-surgery. The post-surgery MRI shows a clear cavity. But, 6 weeks later there was definitely a “suspicious” enhancement within the cavity. It’s no bigger than a pea, but it’s probably a recurring tumor. There’s a small chance it might be nothing, only time will tell. I don’t know why, but that news really got me down.

Are you paying attention, Texas Medical Board? That needs to be clarified.

Although Adam had drank 11 liters (yes that’s right) of water, he had excreted 12 liters. His weight had dropped by 2 pounds, so Dr. Barbara explained that he is probably dehydrated. She recommended that we only increase the dosage by 20ml on Saturday just to be on the safe side, but to keep an eye on his fluid intake and weight. So, Adam has been drinking and eating like a champ and polished off a massive dinner last night. He drank even MORE water this morning to make sure his weight was back up. He still came up a bit short on his fluid totals (intake was 12 liters, but output was 13 liters), but weighed in at a much healthier 155lbs. this morning. But, the substitute doctor wasn’t happy. She thinks that Adam is retaining water. What?? He excreted more than he took in. He can’t possibly be retaining water. What the heck is he retaining? His weight gain can be easily explained by the mountain of penne bolognaise I forced him to eat last night. But, she refused. No increase in dosage.

So who’s really in charge of the patients at the Burzynski Clinic?The other good news is that Adam is at his target dose. Dr. Burzynski himself has been reviewing Adam’s case, and for mixed gliomas the dosage can be lowered and still be effective. Adam is NOT on any steriods and has not suffered any fatigue at all. This is nothing short of miraculous. Many patients have ended up in wheelchairs because of the debilitating fatigue. And everyone has to take Decadron to keep cranial pressure down. Adam hasn’t needed any. Everyone is really pleased with how well Adam is doing so far. And Dr. Burzynski has a prediction… he believes that Adam’s tumor will be gone within 2 months, and after 8 more months of maintainance treatment, it should never recur. I LOVE that prediction. (emphasis added)

Since I started exploring extraordinary claims, I have noticed that people are willing to pay almost anything for 1) hope and 2) flattery.

We just received a call from Dr. Barbara. The radiologist still has to do a few more measurements, so he cannot say for sure if the tumor has shrunk. However, there is considerably “less enhancement” in the tumor. This means that there is less activity, and the tumor is showing up less dense on the MRI than before. That explains why it is so difficult to see in the image. All good news!!! Dr. Barbara said, “Geeve Aatum beeg hug frum mee and goa celebrate!”

I’m no doctor, but it just doesn’t sound like the tumor is shrinking. And this seems to be confirmed in the May 12th update, when it is revealed that the tumor has grown 20% in the last 8 weeks. (The progress of the disease, as is often the case w/ Burzynski, seems independent of the ANP dosage.):

The MRI showed that the tumor that had shrunk by 40% 8 weeks ago, has now increased in size by 20%. There is also another lesion that has remained unchanged. […] The tumor seems to be affected by the treatment, but apparently this dosage level just isn’t going to cut it. So, Dr. Barbara has decided to increase Adam up to the maximum dosage. To put it bluntly, this sucks. It sucks on so many levels.

On June 11th, we get a report that looks like someoneat the Burzynski Clinic nearly gets Adam killed (they never find out who it was…apparently they don’t put things like “calls to patients” in patient files at the Clinic or something) when they call saying that his blood work is bad, setting off a chain of events that leads to him nearly slipping into a coma.

On the 22nd of June, the MRI shows that Adam’s tumor is “stable,” which is a “success” at Burzynski’s Clinic, but it is a loose interpretation of “success” that no other researchers find acceptable. According to a site review of Burzynski’s clinic: “Moving from protocols to results, I am surprised by Dr. Burzynski’s statement that stable disease is a positive outcome. That runs contrary to established criteria for trial design. In the context of phase II trials, which are short-term studies, stable disease is not reported as a positive outcome.”

By August it seems that the tumor is growing again, and we get the sad news in one of the most bare moments I’ve seen since I’ve started this project:It’s 5:00 in the morning, and I just can’t sleep. Adam and I have been talking, holding hands in the dark. The bedroom is actually dark for the first time in 6 months. And completely silent. The whooshing of the pump is gone, as is the pump’s bright display that used to cast a glow around the whole room. It’s over. We received a call yesterday that shocked both of us to the core. Adam’s lesions have grown since the last MRI 8 weeks ago, and there is now a third lesion. The treatment didn’t work. It’s worked for so many others. It is the one treatment that gave us any hope of Adam seeing the boys grow up. He probably won’t ever get to meet his grandchildren. He probably won’t see his boys get married or finish school. He may not ever get to hear Finlay say “Daddy”.

What is all the more galling, that after failing to help Adam in any meaningful way, the Clinic suggested that he come back and start a NEW course of treatment:We don’t know what we are supposed to do next. We have discussed a few options, but they all look so awfully wrong. The Burzynski clinic is encouraging us to come back to Houston so he can start gene-targeted therapy. It just feels wrong. First of all, we need to come up with $30,000 to start the other treatment, not to mention all the expenses of going down there. It makes both of us nauseous just thinking of going back to that place and starting over. The monthly cost of the treatment is over $20,000. And it has a much lower rate of success than the antineoplastons.

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23 Responses to Adam McArthur’s Story

The best thing to do is to continue to write about this. We’ve recently started a website called “The OTHER Burzynski Patient Group.” Links to there would be appreciated and there is a storify site by mr2sheds that you can use to export each story in its entirety.

Beyond the decision to choose the Burzynski scam, they have now gone into the deep abyss with coffee enemas, juicing, hardly any carbs for Adam’s diet. They both are starving him in the belief that the cancer is being fed by anything that isn’t organic, range fed, or shoved up the…

I am left wondering, how many Adams and Vanessas are out there dealing with the harm Burzynski has caused, gone broke in the process (although these two seem to have had a lot of monetary support from others – not fundraising like the majority) and turned to the dark side with woo of another name other than Burzynski’s crap.

The bits and pieces you get from Vanessa’s blog, talk about herself and not much else. I wonder how Adam really feels about all of it. I know what I feel, so much sadness for him. So much sadness for all the others who believed in false hope and by the tone of Vanessa’s own words, seemed *pressured* by the Burzynski clinic itself into that scam of a treatment at the high cost of ….what?

I am also left wondering, what if, just what if…Adam returned to his conventional oncologist, if he’d have a chance after all the damage that has been done and continues to be done? (Vanessa claims Adam refuses chemo and radiation – I can understand that, but I certainly can’t understand what they’re doing now, it’s causing so much more harm).

How dare you. No really, how DARE you. If you have a problem with this doctor thats your right and you can talk about it as is also your right, but talking about other people who are suffering, people who are fighting for Adam’s life – taking their own words, editing them, omitting, them and twisting them and then JUDGING THEM????? This is NOT compassion and it is NOT information. It is defamation, it is cruel, and it deserves and apology. I respectfully demand that you remove this post. Then you can apologize to Adam and Vanessa in a New Post to fill its place. I am VERY disappointed. Keep your problems with the Clinic between you and the doctor. Leave innocent people out of it. Especially when you don’t have their permission to talk about their lives and their decisions.

From the tone of your post, I have to conclude you have no idea what it is like to have cancer or a life threatening illness. Do not even try to take that one on from an arm chair. We might be desperate for hope and we might be trying “unconventional cures,” but we’re not stupid. We do our research, we make our decisions, and NO ONE KNOWS how urgent and important they are than US, the people who have the illness and LIVE IT! How arrogant to assume people are misinformed, superstitious or burying their heads in the sand, just because they choose a “unconventional treatment.” Just what are your credentials? DO you know the facts? Is your life riding on knowing them? Then tell me why, if conventional medicine is the answer for cancer, has there not been a cure or updated treatment since the 50’s for the most common cancers? As for your assertion about food, DO THE RESEARCH. For instance, carbohydrates are linked to the release of insulin which is a growth hormone for everything, including cancer. Compounds in food influence genetic codes. Do the research!!! Have you investigated big pharma and the corruption with research trials, the FDA and pharmaceutical interests? Perhaps if you followed up on that, you’d be on to something.

You’re right. I’ve never had cancer. My mom did. She got better after surgery. A friend of mine did. She got better after surgery. A couple of my friends have died long and agonizing deaths. I assure you, however, that I do not take this lightly.

Of course just because standard care can’t guarantee a cure, or even a measurable effect on any individual’s cancer, in the aggregate, it does show improved outcomes. Cancer is a complex disease, with hundreds of types and thousands of potential causes. But cancer research has been proceeding (too slowly in my opinion). Just because something isn’t perfect doesn’t mean that you should throw out the baby with the bathwater, however. That’s what’s known as the “Nirvana fallacy.” The interests and business models of pharmaceutical companies are completely irrelevant to whether or not Burzynski’s treatments work.

Bob, I am glad to see you do not take this lightly and am sorry for your personal encounters with the disease. But, to break down your reply, item by item:
1) As I am sure you realize, outcome studies are greatly influenced by their design and subject pool. Many “outcome studies” are based on the effects of proposed treatments for stage I cancers, which may be eradicated by surgery. However, when supplemented by more toxic measures, give the appearance of the toxic measure eradicating the illness for the stage one cancer and erroneously provide support for the stage 4 type.
2) I agree, research is advancing at a snail’s pace, and again, I must ask “WHY?”
3)I agree, again, that throwing the baby out with the bath water is not prudent. It sounds as if that is what you think people are doing when they choose this, or any alternative treatment. Again, be careful about assuming these are not carefully researched and weighed decisions, based on data about ALL OPTIONS. You admit that traditional treatments are not perfect, but say this is not reason to abandon them. The same logic can be applied in the opposite direction, making it appear you have engaged in the same fallacy.
4) In my opinion, to assume that people are irrationally abandoning reason when they choose an alternate option is what is called black and white thinking. It is not always one way or the other, but a weighing of options.
5) I beg to differ about your final point. The interests of the pharm co’s do come to bear on this issue and are relevant to everything from who funds and designs outcome studies to which treatments are promoted, taught and supported at medical schools and commercially.

I’m not passing judgment on them, and I made sure to post links to everything that I said for verification so that readers can decide. Patients in this completely horrible position need to be protected because they are extremely vulnerable. In fact, if they were to contact the Texas Medical Board and file a complaint, I think they would have a very compelling case. I have not contacted them about this, even though the care the have received has, by their own account, been transparently shoddy, because they have other things to worry about. I see them as being victims. have been agonizing over the hundreds, literally hundreds of similar tales of unfulfilled hopes given by the Burzynski spanning decades.

What have I gotten wrong, if I may ask? I have not said anything that was not willingly shared with the world, and I have tried to be honest about the facts, to raise awareness of the fact that people sometimes need people to look out for them. But please point me to any factual error, because I am eager to correct the record.

I have cancer, have a blog AND I’m doing Burzynski treatment. In the entry it says “where hope exists”. It is true, because my doctors didn’t give me hope but at the Clinic, I felt I could go back to my life again. You have no right to write about Adam’s decision. Write about YOUR own decision. In my blog, I never write about others. You should re think what you wrote

Hi, Celeste. I’m sorry about your diagnosis. I’m not sure what entry you are referring to. I assure you, however, that I have thought long and hard about this. I really thought about it. I knew that if I brought this up, I would be seen by patients of his as a bad guy. I know I’m showing that the hope that his guy offers is probably false hope. I’m showing that he’s been telling patients the same stories for decades. But these stories aren’t written for his current patients, who I am leaving alone–there is no point in trying to pull someone out of such a huge decision. These are for the patients who have not yet made that decision. I want them to know what they are dealing with. I want them to know that when he says a tumor is “breaking down on the inside” that it is statistically more likely to be because the tumor has actually outgrown the blood supply (he’s apparently been saying that for years and has never learned otherwise). At theotherburzynskiclinic.wordpress.com, you see it over and over. When he says that ANP is non-toxic, I show that it can put you in the hospital. And when he banks on a handful of testimonials, I show the hundreds he does not tell you about.

I care deeply about your health, and hope you will be well. Please don’t give me another thought, though I will be thinking of you.

You have misrepresented my and Adam’s story, and for that I am very disappointed. You introduce the story as being “sad” because we “shun science”, and you don’t think that’s being judgmental? Your tone throughout this piece is patronizing and condescending. You also state that we are “willing to pay anything for hope and flattery”. That is a dangerous statement to make about people you have never met who are fighting a fight you have no experience with. You conveniently omitted the posts where I documented Adam’s positive responses from the therapy, as he did respond initially with a 40% reduction in tumor mass. And your remark about the clinic nearly killing Adam is overly dramatic and inaccurate. You said yourself in the comments section that “Just because something isn’t perfect, you shouldn’t throw the baby out with the bathwater.” You seem to have done this in constructing your website. Where are the success stories? In our time at the clinic nearly a year ago, we came to know 5 other patients who were at the beginning stages of their anti-neoplaston treatment. Adam and one other patient are no longer on the treatment, because it was ineffective. Two have had tumors cease progression since being on the treatment. You said that science doesn’t consider “stable” a positive outcome, but for someone who has faced the horror of a rapidly progressing brain tumor, “stable” is a fantastic result. The other two patients have had a complete response, and their brain tumors are completely gone. In the material we received at the Burzynski Clinic, his results for brain tumors are as follows: 33% have had complete remission of their cancer, 42% have achieved stable disease, and 25% have experienced continued progression of their cancer despite the treatment. From our experience directly with Burzynski patients, these statistics pan out. It is irresponsible and cruel to try to prevent people from considering the anti-neoplaston treatment without citing accurate statistics. You have not met the man and have not spent time in his clinic. If you had, you would know that he is very humble and soft-spoken, and truly cares about his patients. I find your treatment of Dr. Burzynski and our personal story completely unfair. That is what is truly “sad”.

I am very sorry that you took offense to my post. My heart broke over and over and over while I read your story. You misinterpret what I mean by sad, I think. It made me sad, is what I’m saying. I’m truly pulling for Adam, and I hope–really really hope with all my heart–that he makes a full recovery. And you walked away from treatment options that have been published, vetted and demonstrated to have levels of efficacy that Burzynski has never had. This is, of course, your choice and one that I am desperately sorry you ever were forced to be in a postion to make. Nobody deserves what you’ve been through.

Re: the clinic calling you…coma. There was a long chain of events that I did not think was relevant, but is there is some detail there you think I should add, please let me know how I can fix that.

I will finish this reply in a bit–I just want you to know that I read your comment and was not blowing you off. Could you send me a copy of Burzynski’s brochure?

Bob, maybe your heart is in the right place and you truly do care about Adam and his family. BUT you need to apologize for using their story. Your statement back to Vanessa was “I am very sorry that you took offense to my post”. That is not an apology to them at all! You are only thinking of yourself and how you are feeling attacked by people who know and love the McArthurs. Of which I am one. By all means go after the clinic you don’t believe in but leave the family we do believe in out of it!!!!!!!

That’s because I was not apologizing. This is an important story because Burzynski only has a medical license today because he convinced a judge that he did not treat patients. Clearly, if the story above is correct as told by Vanessa, there appears to be a major discrepancy. When you consider that the components for the drugs he used on Adam “can be purchased from any chemical supply house for about 9 cents a gram,” (http://articles.mcall.com/1994-12-01/news/3003275_1_human-urine-cancer-treatments-burzynski-clinic/2) and you consider what the McArthurs paid out in terms of money and precious time, how can I in good conscience not draw attention to every dubious case? I want to prevent others from going through the same “horrible 6-month detour,” as Vanessa put it. Vanessa and Adam deserve better. Burzynski’s future marks deserve better. If anything good comes out of this entire horrible mess, it will be that.

We will have to agree to disagree on this matter, and for that I am truly, truly sorry.

Bob, I don’t think you’re a bad person. However I would like to point out the definition of “libel”: to publish in print (including pictures), writing or broadcast through radio, television or film, an untruth about another which will do harm to that person or his/her reputation, by tending to bring the target into ridicule, hatred, scorn or contempt of others. You have extracted passages from my blog posts in an attempt to defame Dr. Burzynski and ridicule cancer sufferers who go to his clinic with the hopes of a successful outcome. It’s inappropriate and bad journalism. I respectfully ask you to please remove our story from your website. I do not give you permission to use it in the manner in which you have done. I would like you to also reconsider the way you have violated the families of the children who passed away after attempting the Burzynski protocol. It is incredibly insensitive to use their stories. I have read some of your other articles and seen your YouTube videos. You are a better researcher, writer and speaker than you have shown in your anti-Burzynski campaign, and you should not need to resort to such low measures to make a point. I respect your opinion and your right to portray what you see as the “other side”, but please reconsider how you have gone about it.

I’m certain that someone like you would never willingly associate with or defend that.

If I ever EVER treat someone like that–threatening them of pederasty in public or threatening a teenager—take me out back and end me. The same goes if I ever mock a cancer patient. However, whether or not I ever needed permission to write about this is not an issue. I am not going to take anything down. Like I said, I will add clarifications if I got anything factually wrong. Burzynski shamelessly uses his few “success” stories–and even those are doubtful (See for instance: sciencebasedmedicine.org/index.php/stanislaw-burzynski-bad-medicine-a-bad-movie/), and never mentions the people who he was unable to help, who vastly, vastly outnumber the former group. Burzynski is a big boy. He can defend himself.

The point here, Bob, is that you have taken the pain of another and twisted it and used it to serve your own purpose. You have even been confronted with the deepened torment that has occurred due to your words and actions and you insist in your continuance…hiding behind the excuse that the wounds to a few are simply acceptable collateral damage in your war against this clinic. On an ethical level, that is completely abhorrent and inexcusable. Your insistence on dragging the already wounded into your personal battle..not only without their permission..but now with their direct, clear, and unarguable disapproval…is not only ethically indefensible, but potentially legally objectionable.

I will be further researching the IP legalities involved in this situation. Should your posts here, copying from a potentially copyrighted source without permission, be in violation of any laws, your ISP will be contacted and any further appropriate actions will be pursued.

Well, this is how it’s going to be. I’m going to do a re-edit in a way that uses less text. Then, I’m going to shut down comments on this thread. Then, if I hear from anyone else about this matter, I expect it to be from a lawyer. I am entirely within my right to discuss this matter in any forum I desire. I’m very sorry you feel this way.

Like I said, as a courtesy, I have edited down the use of original content, something I have no legal obligation to do. In addition I have made this post unavailable to a social network sharing site. As always, should a factual error be found, you may contact me (using my gravitar user name at gmail) and I am eager to make corrections. Until such time, the post shall stand as it is.